More about parents of children on the autistic spectrum

A few days ago I posted a piece which seemed to me to be pretty sympathetic and uncontroversial. In it, I mentioned that the parents of children on the autistic spectrum had for many decades, at least since 1943, been noticed frequently to be a little strange and somewhat different from other parents. I speculated that this might be due not so much to their also having autistic features or mental illnesses, both popular current ideas, but rather to their experiences as parents of a child who is outwardly ‘normal’ but who behaves bizarrely. As a result, I was called ‘callous’ and accused of ‘ignorant idiocy’.

While I have been away, I have been exchanging emails with professionals in this particular field and last night did a quick trawl of the literature. As I suspected, this was not a new idea and was in fact the most reasonable explanation of what many who work with such families have long observed. One person commenting on the original piece clamed that over 70% of children on the autistic spectrum have a parent who is also on the spectrum. I could not find any reference to this and would be glad to hear more about this idea. I have in front of me volume 15 of Developmental Clinical Psychology and Psychiatry, published by Sage in the USA and written by Laura Schreibman. It is a standard work on the subject of autism. On page 51, we find the following, apropos of the etiology of the disorder:

It has been widely demonstrated that a child’s behaviour has effects on the behaviour of the caretakers (e.g. Bell 1968, 1971; Yarrow Waxler & Scott, 1971). It is certainly reasonable to assume that any lack of social responsiveness evidenced by the parents might be a reaction to the lack of social behaviour, excessive tantrums and bizarre behaviour of their autistic children (e.g. Rimland, 1964; Rutter, 1968; Schopler & Reichler, 1971).

I found other references to this phenomenon but, as I have remarked before, this is a personal blog and not an academic journal and I do not think it necessary to reference these posts too extensively! It is enough to say that this was not some weird idea of mine but is part of mainstream thinking on this subject.

I think that rather than taking issue with what I specifically said about this matter, those objecting wished to close down any discussion about the origin and etiology of the syndrome. This does not strike me as being at all a good idea. I mentioned the old idea that parents were solely responsible for their children’s autism. It is careful research which exploded this notion. I really don’t see that it would be a good idea now to stop any further debate or research on the subject. I have seen this sort of thing happen before with autism. Some years ago, it was noticed that a greatly disproportionate number of African and Caribbean children were presenting with autistic features. In one London borough where I worked, this group represented around 40% of the population and yet about 80% of the children on the autistic spectrum were black. This was such a hot potato politically, that nobody would discuss it and this delayed research, with bad consequences for the families concerned. Suppressing facts and trying to prevent discussion of these things is seldom a good idea and almost inevitably harms the kids themselves in the long run. The more that we discover about this disorder and its causes, the better.

This topic is important for home educators, because autism seems to be commoner among home educated children than in the wider school population. When we find that one particular group has higher incidences of autism, whether it is Nigerians or home educating families; it is of interest. I cannot see that exploration of this could be a bad thing.

The 'joy' of late reading

Those readers whom I succeeded in irritating yesterday will be glad to hear that I am going to be away for a few days and that they will not be exposed to my unpleasant views for a while. It beats me why these types carry on reading my blog if it annoys them as much as all that! Before I go, I must mention that I have been looking through some back issues of the home education magazine produced by Mike Fortune-Wood. One article caught my eye in particular. It was by his wife Jan and was called The Joy of Late Reading. I did not think much of it, but it started me thinking about the frequency with which those who have themselves had reading difficulties might be reluctant to teach their kids to read. Mike Fortune-Wood himself of course had great difficulties in this field and so too did a number of other parents who are keen on not getting their children to read at the same age as everybody else.

Could there be a connection between the satisfaction and pleasure that parents gained from reading as children and their attitude to teaching the skill to their own kids? Could it be that those who struggled to learn to read might have a bad feeling about the whole thing and not wish for their own children to suffer in the same way? This seems quite plausible. Of course, phrasing it like this would not sound very noble; ‘I didn’t enjoy learning to read and so don’t really value it. As a result, I am not bothered about teaching it to my kid, he probably won’t like it much either’. Better by far to trick it out as a high principled educational philosophy, thus making a virtue out of what is essentially a weakness.

Parents of children on the autistic spectrum

This post is not restricted to home educating parents, but is about something which a number of people have noticed. Until a few decades ago, disorders such as schizophrenia and autism were thought of as being produced by strange parents. Leo Kanner, the man who first defined autism in the 1940s, came up with the idea of the so-called ‘Refrigerator Mother’, whose emotional coldness produce autism in her child. The fathers too were supposed to be remote and not join in their children’s lives properly. These ideas are now discredited and we know that both schizophrenia and autism have a genetic component and are essentially neurological problems, rather than a result of bad parenting.

And yet, it has been observed again and again that the parents, particularly the mothers, of autistic children are often a bit odd. They typically present as a little abrupt and not empathetic; slightly disconnected, in fact. Now all this goes very much against the prevailing paradigm and so tends to be ignored. When the subject does come up for discussion, it is assumed that because autism can be passed down through families genetically, perhaps these parents are themselves on the autistic spectrum. There is another possibility and it is an idea about which I would like to hear readers’ opinions. The main emotion towards them encountered by the parents of a child in a wheelchair will be compassion and pity. Irritating, yes, but quite understandable; people feel sorry for a mother whose kid is crippled. The main emotion which many mothers of children on the autistic spectrum come across in others can be hostility and disapproval. This is because their children look normal but apparently behave badly. They are often seen as lax and careless parents, unwilling to tackle their child’s supposed naughtiness. This difference in experience must have some effect upon the parents.

The idea which some of those with whom I have worked came up was that this experience of constantly feeling embarrassed about your child might after a few years result in mothers become a little harder and disregarding what others felt and said. In other words, any perceived oddness in such mothers would be a long term reaction to how they are treated by others, particularly other parents who do not understand autism. I have certainly seen one case of a mother who, I knew both before and after having an autistic child, but since this sample could hardly be smaller, (N=1!), I do not feel able to advance it as evidence. Do readers have any thoughts on this? Have others found the parents of children on the autistic spectrum as being a little strange? If so, can anybody come up with an explanation?

Two people withdraw from the home educating ‘community’

I was a little surprised to see Mike Fortune-Wood announce that Tania Berlow has withdrawn from the home educating community. How does one actually do that? By not home educating any more? By no longer posting on the Badman Review Action Group list? Ali Edgeley, her best friend, clarified matters later by explaining that Tania would no longer be commenting on message boards, lists, forums and so on. She has apparently ’suffered’ from people saying horrible things about her over the Alison Sauer guidelines business. I have to say that this strikes me as absurd. There has not been any shortage of people saying horrid things about me over the last couple of years, but I would not say that I have ’suffered’ as a result! People need to get a sense of perspective.

I must express my unbounded joy at the news that the awful Alison Edgeley will also be withdrawing from the ‘home educating community’. People have in the past been a little sniffy about my commenting on home education, on the grounds that I technically stopped when my daughter turned sixteen in the summer of 2009. What then shall we say about Ali Edgeley, who hoofed her kids back into school when she started up a business in 2007? Three years after she had stopped home educating, she was still pestering the London Borough of Islington with communications like this:

http://www.whatdotheyknow.com/request/27702/response/67948/attach/html/3/306585%20Anti%20Badman%20Campaign.doc.html


Both woman are active on the Internet in other capacities than as home educators. Ali Edgeley posts as tinpanali and Tania as both Alex Panzeca and catbythetail. Some of the things that both Ali and Tania get up to and say elsewhere, tends to confirm strongly some of my remarks about the general strangeness of many well known figures in the world of home education!

Indigo Children

I have written before of a tendency among British home educators to embrace crackpot beliefs and unconventional ways of thinking. These typically range from homeopathy to the New World Order. Over the last few months, I have been told of another such loopy idea which has apparently become very popular in some quarters. This is the idea of the so-called Indigo Children. Now I have of course heard of the Indigo Children, but was not aware that it was flourishing in this country. Like so many other weird belief systems, it started in the USA. Put briefly, the idea is this. Some children who have been diagnosed as or exhibit the signs of having an attention deficit or being hyperactive, are really very special and misunderstood by the rest of the world. Far from having special educational needs, they are really the forerunners of a new kind of human. This is curious, because others have observed that many home educating parents have the idea that their children are very talented and empathetic; although in ways which cannot be measured by conventional means.

Indigo Children have a number of characteristics. They behave as though they are very special and important. They are intolerant of authority and do not react well to being told what to do. They are amazingly sensitive and talented, but not in ways that schools recognise. They will not submit to the ‘ritualised behaviour of society’; in practice, this means that they refuse to wait their turn in queues and so on. Many of them have been diagnosed as having ADHD.

Now all this is very interesting. There are two possible explanations for conduct of this sort. One is that these kids have been sent to the Earth by a higher power to lead us all into the Age of Aquarius or something of the sort. In other words, they are truly special, but our blinkered eyes are unable to recognise how important and special they are. The second possibility is that these are spoilt brats who have been indulged by their parents and allowed to get away with murder and that when they start school and find that they are not the centre of the universe, they take the news badly!

I have been given the names of a number of parents who are well known on the British home educating scene who, it is claimed, believe that their children are Indigo. I have no idea whether any of this is true, but it does seem to tie in neatly with a lot of what I have observed. Quite a few of the home educated children in this country have been diagnosed with special needs of one sort or another. In America, this is the group from whom the majority of the Indigo Children are drawn. Many British home educators do seem to think that their children are fantastically sensitive and have all sorts of abilities which conventional education has failed to recognise. The very idea of their taking GCSEs like all the other kids is absurd; they are far too special for such mundane things as examinations.

I am wondering if any readers have heard about this at all? As I say, I am not claiming that this it is actually the case that the Indigo Children business has taken a hold among British home educators; merely that I have been told by several people that this is the case.

How normal are home educators?

About eleven years ago, a school of thought emerged in this family that my home educated daughter should start seeing more children of her own age. Of course there were those at Woodcraft Folk, ballet lessons, church and so on, but it was still felt that she needed to spend more time playing with other kids and less being experimented on by her father like an educational guinea pig. As a result, I joined Education Otherwise and the Home Education Advisory Service. I received lists of names, addresses and telephone numbers of other members of these organisations in the country and contacted about a dozen, attempting to broaden my child’s social circle.

Interestingly, this was at roughly the same time that Paula Rothermel was doing her research and since 95% of her subjects belonged to Education Otherwise, it is fair to assume that our random dozen were pretty similar to the types that she was working with at that time. Now I am sometimes reproached for suggesting that home educators tend to be a bit odd. The thesis advanced by my critics is that home education is simply an educational choice and says nothing at all about the parent making it. Some people send their kids to one maintained school and some to another. Some parents choose an independent school and others decide to educate their children at home. One cannot generalise about home educators any more than one can about those who send their children to school. I cannot agree with this hypothesis. For one thing, my common sense tells me that the vast majority of parents who have problems with their child’s school, sort out those problems or at the most move the child to another school. Similarly, those who wish for a better education for their four year-old either attend church to get him into a church school, move house to a better area, enage a tutor for a couple of evenings each week or persuade a relative to pay the fees at an independent school. Almost by definition, those who choose not to send their children to school at all are extremely atypical.

Now I have nothing against odd people. After all most people, even my close friends and family, regard me as being a bit mad myself and they may well be right. I doubt if anybody was at all surprised when I chose not to send my young daughter to school; it was exactly the sort of thing that I would do. Is this the case with the average home educator? I have known many in the past, some in connection with my work. It has been suggested here that those whom I have met are likely to be unusual and not at all typical of home educators. Let’s look at those whom I met after joining EO and HEAS. I can tell readers at once that all these parents were strange and not at all like the average parent of a school aged child whom one meets all the time socially. The first whom we visited may have been an extreme case, but she set the tone for the rest of our experiences with home educating parents living in West Essex and North London at that time. I never actually met the daughter. She was so shy that she would not come downstairs. She communicating by speaking to her parents from upstairs, where she always retreated whenever there were visitors. The first time we went to the house with my daughter, none of us actually met the child. My daughter did not want to go upstairs alone, because she thought the house was creepy. She was right! The mother was like a wraith and very nervous and peculiar. The family did not eat or drink anything warm. All food and drinks were cold. The child’s health was apparently very poor, possibly as a consequence of this. On later visits, my daughter did go upstairs, but was not very keen on going to the house.

Other parents were not as weird as this, but I certainly noticed some common trends. Some of the parents belonged to more than one of these categories. There were those with a touch of religious mania, some who were bitterly opposed to all authority, others who had had bad experiences themselves at school and also some who were very protective of their child and seemingly obsessed with her safety or welfare. I formed the impression that the decision to home educate had in many cases stemmed from their characters, rather than from the ostensible circumstances which had led to home education. What I mean by this is that the things they talked about would not have caused an ordinary parent to decide to take their kid out of school. Of course, this was precisely the same with me. On a rational level, my decision to home educate was prompted by purely educational considerations and has proved a great success. However, it was my own past experiences which primed me in that direction and the explanation about education was to some extent a rationalisation; an excuse , if you will.

How does this tie in with local authorities and their desire to visit families and investigate the situation in their homes? Quite a few of these parents were probably known to the schools as being weird individuals. In some cases, their behaviour and conversation would have set alarm bells ringing in any normal person as soon as one met them. Me, I am very broadminded and being pretty strange myself, am less apt to make judgements of this sort. Nevertheless, I can see where there would have been concerns about these children and their parents.

I am curious to know whether readers honestly maintain that the average home educator is not a little peculiar? Is it really the case that the only difference between home educating parents and the average parent of a child at school is that one sends their child to school and the other does not? Hands on hearts now, how many people here educated their children at home for the following reasons: religious convictions, desire to protect the child, opposition to authority or as a result of bad feelings experienced yourself as a child at school? And now, for how many of your was it a purely educational decision?

Home educated children on the autistic spectrum

Anybody pushing a child around in a wheelchair may expect generally to receive favourable treatment from the public. People make allowances, move aside and are tolerant of odd behaviour from the person in the wheelchair. It is clear that a disability is involved and so passers-by wish to appear accepting and compassionate. How very different is the attitude encountered if one is with a child who looks like a little angel but who is prone to snatching things away from other children and pushing them over if they object. The indignant looks which parents or carers receive, particularly if they are trying to extinguish such behaviour by not reacting to it when exhibited by the child in question. The kid may have a disability every bit as real as the child in the wheelchair, but of course autism does not show in the same way. The challenging behaviour is perceived as aggression or sheer naughtiness. An unspoken assumption is that it is being tacitly condoned by the adult caring for the child, especially as I say if the adult reacts calmly to the apparently bad behaviour of the child. Other parents will mutter to each other, ’Little thug! And his mother didn’t say a word to him, didn’t even tell him off!’ Useless to explain that shouting at a child on the autistic spectrum will just make everything ten times worse.

One can see why parents who have to endure this sort of thing every day might get a little ratty with those who do not understand the special difficulties which their children have. One can quite understand why they might get irritated when a local authority officer offers well-meaning but foolish advice for dealing with a syndrome about which she so obviously knows nothing at all. To that extent, one can see why some home educating parents of children on the autistic spectrum resolutely refuse to have any dealings with their local authority. There is however another side to this; one which many home educating parents don’t see.

Living with a an autistic child can be an absolute nightmare. In addition to the autistic features, the child might be hyperactive, need little sleep and have a variety of extremely odd habits. One child might have an obsession with collecting shoes and throwing them out of the window. Just imagine that, if you live on the tenth floor of a tower block and are cooking a meal. Your baby is asleep and you realise that your non-verbal eight year-old has managed to get a window open and throw everybody’s shoes out! What do you do? Do you wake the baby and make a family trip downstairs to collect the shoes? The lift is out of order again, so this is no slight adventure. Although you know he can’t help it, won’t you get the tiniest bit irritated at this sudden emergency caused by your child? Or suppose that your daughter has an obsession with laying bottles on their side, because seeing them standing upright makes her distressed? There you are, just getting ready to watch Eastenders and you discover that she has laid a large bottle of cooking oil on its side and the kitchen floor is now awash with the stuff. Ready to snap yet? Of course, some parents do snap. They hit their children or lock them up out of the way in their room. I have seen an autistic child’s bedroom with a padlock fixed to the outside to keep the kid from wandering in the night. For some of these parents, having the child at school all day is the only thing keeping them from going mad themselves. And on top of this, they also need respite care as often as they can get it at weekends.

Children like this are at a greater risk of being hit by their parents. I am not talking about a measured smack, either. I am talking of all the frustration and grief boiling over until the parents beats the child. This sort of thing happens and is a hazard to children with certain syndromes. If a parent who is just about coping were then to have this difficult child with her all day, it is a racing certainty that she would snap at some point. This is not to say that they do not love their children, but nobody who has not spent time with such children can have the remotest idea of the pressures that are at work. A result of this is that when the parent of such a child announces that she is rejecting all future help and will from now on be spending twenty four hours a day with her child; alarm bells start ringing.

I have spent a good part of my life working with both children and adults with various problems and used to foster a five year-old kid with Heller’s Syndrome; a type of late onset autism. By the end of the weekend, I was almost at my wits end. Often, the fears and behaviours of children and young people on the autistic spectrum are not at all accessible to reason. One cannot sometimes explain to them that there is nothing to be afraid of on an escalator going down to a tube station. They might simply go mad with panic and claw and bite until you take them out of the station. Or it might be something else entirely that causes problems. I know that I could not spend twenty four hours a day with some of the children with whom I have worked and I know also that their parents too would be unable to do so. This is one reason why local authority officers are sometimes a little concerned about a decision to home educate such a child. Some parents here have expressed annoyance at the ignorance of these people, but in a sense, the more that they know, the more that they are likely to be uneasy about the idea of home education.